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finding the words
Finding the Words...to Self-Regulate!
(Part 1)
elcome to a new column and a brand new topic: so terrible in this dress," and again, our friends know to deny
how our kids find words to promote their own this. "Oh, you do not!" they scoff. "You look wonderful!" So,
self-regulation! We know only too well that the we settle down, move away from the mirror, and go to the
Wworld can be over-stimulating, demanding, and even scary party with a modicum of self-confidence. In our hearts we
for our kids with ASD. And, know that at least our friends
of course, the kids feel this love us enough to tell us what
acutely! But often, they come we need to hear!
up with words that help make ... when Our kids are the same...they
things safe again. And, these know their family and friends
words can work, as long as we're love them the way they are,
someone is there to under- and just knowing that is help-
stand them! nervous, ful in itself. But our kids' pleas
So how do our ASD kids use for more specific reassurance
language to calm themselves? we often fall on deaf ears because
In a broader sense, how do they the pleas are nonverbal, or
find the words to self-regulate? talk to difficult to decipher. As a
And, how can they enlist our result, our kids often don't get
help in creating environments ourselves the help they need to create
that promote self-regulation? a safe environment around
First let's ask ourselves this to calm themselves. What do our kids
question: how do neuro-typi- sound like? And what can we
cal adults do it? We don't even down. do to "listen" better?
think about it most of the time, Here are a few scenarios from
but, when we're nervous, we a typical week at our clinic. I
talk to ourselves to calm down. think at least one of them will
"It's ok," we say, "you've done ring some bells with you.
this a thousand times before."
We use self-talk to keep our- Story #1: Russel is an opti-
selves moving forward during mististic boy, with the ability
busy days. We remind our- to create stories that promise
selves, silently or in a whisper: a happy ending. Russel thrives
"Don't forget the ice cream before you leave the store." We in most environments, as long as there is a sensory room for
sing to ourselves to stay awake or to keep from being bored. him to visit periodically. Russel hates loud noises, however,
And, we organize ourselves before many of the multi-step and has a healthy fear of being surprised by them. "There's
tasks of our day. Talk is a tool, and we "find the words" that no vacuum cleaner upstairs," he hopefully states, creating the
work for us throughout our day. environment he wants with his words. "Right," others reas-
We also create the kinds of environments we want through sure him, and he moves on with confidence. Recently, there
talk. We ask the rhetorical question, "How do I look?" before had been a very loud shampooing machine in our building,
the party, and our friends know this is not the time for hon- and Russel commented as we walked in, "S is for shampooer."
est critique and reply, "You look great!" We plead, "But I look Enigmatic, perhaps, but I knew what he was talking about.
?????48 March - April 2009 Autism Asperger's Digest
Marge Blanc, M.A., CCC-SLP
"I'm not sure if it's here today," I said, and Russel replied, he regrets afterwards. "Shut up!" he finally demands, but,
"There's no shampooer upstairs," using hope to create the instead of enlisting support, these words offend and create
ideal world. I knew I was part of that hope, and promised anxiety in others. As his long-time friend, I do actually "shut
to check it out for him. up" when Bevin tells me to, and I try not to take his words
Russel can mostly fend for himself. As long as people who personally. But I also realize I should have stopped talking
love him listen carefully, and read between the lines, Russel many minutes before, back when Bevin was silently scream-
has the capacity to use his words to self-regulate and to feel ing for more space to move around in, and absolute quiet.
safe and secure in his environment. I have learned a lot about "shutting up" from Bevin, though,
and we have even negotiated several two-hour peer parties
Story #2: Mickey, too, is a happy person...a cheerful young without Bevin going over the top. How? By honoring his
man with a ready laugh, and the strong desire to share joy. unspoken pleas, and giving him freedom to move around,
Mickey likes to talk about his favorites: people, activities, to find quiet places to be alone and regroup, and plenty of
foods, and places, and thrives on joking with people he can physical supports when he chooses to be within the group.
count on to share a chuckle. Mickey is positive above all
else, and never utters a discouraging word of any kind. If There are so many things our kids can teach us about their
his stomach feels terrible, he won't say anything about it; he own sense of safety and well-being. These stories have just
just won't eat. If he's angry, he will write about his feelings, touched the tip of the iceberg of self-regulation. Our kids are
but will never give them voice. If he feels sad, he will seek often wiser than the world gives them credit for, and it's up
out the most cheerful people in his environment, and trick to us to recognize this. That our kids can "find the words" at
them into laughing with him. all when the environment gets rough is amazing. And that
"Close your mouth," Mickey instructs me. Then, with his we can help them be understood is cause for real hope for
smile and grin, Mickey makes me giggle, then laugh out their bright futures!
loud as I unwittingly open my mouth again! Sooner or later, In the columns to come, we will further explore self-
depending on the day, the game starts all over again. I close regulation, from the perspectives of the kids who live with
my mouth; I try not to laugh, but it never works for long! dysregulation daily. We will address what we can do to sup-
Before I know it, I am laughing again...and all is right with port our kids' endeavors to make their world safe, and help
the world! Like I do with my friends who ask how they look, them broaden their circles of communication. After years
I know the magic formula with Mickey, and I help him create of being with these three friends of mine, and many oth-
a safe, happy environment! ers, I've learned my role in many different "one act plays."
I know that my part in these "social scripts" makes life safe
Story #3: Bevin doesn't have the directness of Russel, nor the and workable for my young buddies. It's something I would
transparency of Mickey. His communication is more meta- do for any friend...
phoric, and not so easy to read...until it's too late. Bevin
might pull out a cryptic line from a movie or roar like a Marge Blanc, M.A., CCC-SLP founded the Communication
lion with hopeful authority, but he often fails to "finds the Development Center, in Madison, Wisconsin 10 years ago.
words" to tell others what he needs as he goes along in his Specializing in physically-supported speech and language services
day. Without easy access to words to modify his environ- for children with ASD diagnoses, the Center has successfully helped
ment, Bevin often just puts on his headphones and blocks scores of children move through the stages of language acquisition.
it out. The environment just keeps on buzzing around him, Visit www.communicationdevelopmentcenter.com for info and
however, until Bevin finally erupts and finds some words articles, or email Marge at lyonblanc@aol.com.
www.autismdigest.com March - April 2009 49
finding the words
Finding the Words...to Self-Regulate!
(Part 2)
ere comes the Papa," announces Bevin. ? When the sound hurts (too much background noise, mul-
"Oh, I don't think so...he never comes home at tiple voices, loud voices), he tolerates it as long as he can
two in the afternoon," replies his mother Linda. with a combination of noise-busting ear phones and self-
"HBut, three minutes later, Bevin is proven right, and Papa talk. If pressed to listen or respond, however, he falls apart
enters the front door. Linda calculated that three minutes and may resort to "self-defense" or pinching.
before, her husband had just turned onto their street...five
blocks away! Bevin is clearly suffering from sensory defensiveness, which
"We call him `Sonic Ears'," Linda added, with a sigh and has been part of his 14 years of life. When he has sufficient
only thinly veiled humor, as she relayed her story to me. "heavy work" built into his life (vigorous exercise all day
"It's getting worse," she continued. "The listening therapy long at summer camp; regular and appropriately-intense PT
he did years ago was great, but I think he work; well-selected listening therapy), the
needs it again." She was right: those super- ear phones come off, and Bevin is engaged
sonic ears had become over-active again, and much of the time. His language blossoms,
Bevin found everyday sounds too loud, and This is not and all is right with the world. But, for most
loud sounds over-powering to the point of of the school year, none of these things were
pain. That he wears his noise-busting head
phones virtually all the time is no surprise. about us; available, and Bevin and his family have suf-
fered dearly.
The surprise, however, is that Bevin can
make it through the school day at all! "He's a it's about So, as we begin to learn more about Bevin's
good boy", notes his mother, "and he wants sense of safety and well-being, we real-
to learn, but he pinched a teacher last week,
really hard this time." In middle school, that our ize that we are only seeing the tip of the
iceberg of his experience of dysregulation.
doesn't wash well. We had found him a good Sometimes, the only ones who make us
PT in the community again, and decided we children's really understand how it feels are the adults
should try to get him back into OT and lis- with ASD who have the sophistication of
tening therapy as well.
As we continue Bevin's story in this second survival. words, like Temple Grandin. As she often
says, the sound of the school bell in her
column about finding words to self-regu- childhood felt like a dentist's drill in her
late, let's compare three of his very different ears. But she considers her own auditory
reactions to auditory input: sensitivity minor compared to others on the spectrum: "An
auditory sensitivity to noises, when sounds hurt the ears, can
? When the sound is just right for him (a familiar car five be extremely debilitating...Severe sensory sensitivity can be
blocks away), he is able to access good language. a MAJOR barrier to learning in children..." When I looked
? When the sound is too loud for him (conversational at Bevin's face these last few weeks, when things really got
loudness, with one other person), he tolerates it for a bad, he looked like someone with a migraine headache who
few minutes, or even a half hour. When he can't stand it could barely keep his eyes open in the intense sunlight.
any longer, he puts on his ear phones or engages in "self- As we have said before, our kids are wiser than the world
talk" to drown it out. If he is pressed to listen beyond gives them credit for, and when they don't talk about the pain,
his tolerance, however, he automatically delivers a movie it may be for good reason. Who wants to talk about how bad it
line, like, "Shut up!" feels? It's like adding insult to injury. But, Bevin has remained
?????24 May - June 2009 Autism Asperger's Digest